narcotic pain meds, Overall I am wondering about the problems people are having

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NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/16/2011 12:58 PM (GMT -6)   
I, from the time I began on hw in March 2011, I have often read some of the issues of taking narcotic pain meds.  I am beginning to think I dont even belong on the chronic pain forum.  I do suffer from many chronic conditions that require me to take narcotic meds.  I am either very fortunate in not having the problems they seem to cause so many people, or ,  I am not on the type or amounts taken by others.
 
I completely understand the people with chrons disease, heart disease, and other stomach related issues, I myself cannot take nasaids of any type due to the side effects of the meds. 
 
What is puzzling is the side effects others are having re, drowsiness, fatigue, things along this line.  I have been taking narcotic meds steady since 1996, I have changed meds (because I was forced to) from methadone and dilaud to ms contin 60 mg 3xday, with 10 mg percocet as needed for breakthrough.  I was not unhappy to leave dilaud behind as I never found it helpful, the methadone I would still be on if not for the stigma attached that has left doctors scared to prescribe.  Nevertheless, I have been on the ms contin and percs for about 4-5 years now.
 
I am aware that chemicals react differently in different people, I cannot take xanax for example, but have no problems with valium.  I am thinking maybe this is what is happening with people on different types of narcotic meds.  I actually feel energized by the bt pain meds, I get more done, and have more energy than I have without them.  The ms contin, although because it is timed released also does the job in combatting pain without side effects.
 
Anyone else out there who has had good experiences with pain meds?  I was thinking maybe its the length of time I have been on the meds that has made it better for me.  I know others have been on meds for the same amount of time if not longer. Its has been along time, I am sure I had some negative side effects in the beginning, constipation being one I remember.  But I no longer have any side effects that would even make me consider losing the one thing that makes my life liveable.
 
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/16/2011 3:27 PM (GMT -6)   
Nini, I really enjoy having you on the board, and yes, of course you belong here!

I think a lot of people come to the boards when they are having problems to look for help, but we have several regular members who are stable on their pain meds and who get good help from them.

I am lucky enough to not need to use narcotics regularly, only for breakthrough pain. I am trying to hold off on narcotics as long as possible because I am so young and anticipate things could get worse as I get older. So for now, I take naproxen, which does give me awful GI side effects, and Tylenol #4 for breakthrough pain, which is mostly side effect free.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 10/16/2011 7:38 PM (GMT -6)   
Hi NiNi

I understand where you are coming from! I have been on pain meds for just about as long as you have, for the most part I have not had many problems with side affect from the meds. Mostly just becoming ineffective over time and requiring the med dosage to be increased. But people and pain meds can really be a fickle thing, as medications react so differently in different people, what might work well for you and me, might not work at all for someone else! And we might not have any reaction to a pain medication, and another person might be highly reactive to it! There is one thing I have learned, about medicine, there is no one set standard that will fit or apply to everyone! And although I think your and my reaction to pain meds are probably more the norm, you have to consider, the vast numbers of people that come to this web site, and read it, and it is probably just a small minority of them take the time to post here. I am sure the ones that do, are the ones that have problem and where better to come, than here, even if the problems are not so much about pain, but the medications to treat it.

I personally have enjoyed reading your post! I know for me I am in total agreement whit what you said """But I no longer have any side effects that would even make me consider losing the one thing that makes my life liveable."" Oxycontin has been a real Godsend for me, and has also so made my "life liveable!" Now I just wish that my body would just settle down and not be getting any worse, so it would remain "liveable!" It is the continually deterioration that is getting me down!

Just another person like you with a positive experience with pain meds!

White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/16/2011 8:37 PM (GMT -6)   
Heatherlynn and Whitebeard, thank you so much for your positive responses.  I was afraid to many people who need the meds, as we do, were allowing bad media attention make them feel like they were doing something wrong.  Just as diabetic, people with high blood pressure need there meds, so do we.
 
We have to keep fighting the powers that be to not make us feel bad about how we are managing our lives.  I have said this before, but this time I am going to do it.  I am contacting my county, state and federal people and tell them how I feel about being made to feel like a criminal, when no other chronic conditions are made to feel that way.  I do remember in the beginning of this ordeal, feeling like I was doing something wrong.  Even my mother thought I was just becoming a drug addict.  I am so done with feeling quilty about taking meds to have a better quality of life.
 
Again thank you so much, I feel so much better now, this issue has been bothering me for a long time.  Now I remember why I keep coming back.   You are all great.
 
Take care,
 
Kat
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/16/2011 9:54 PM (GMT -6)   
I agree with what Whitebeard said,
I on the other hand have tried many medicines and have had bad reactions to one that
could've been great relief for me Oxycontin helped but I had a hard time keeping awake on that medicine
and it was scaring my husband as he thought I might slip into a coma...
and Lyrica, I felt that one working in five minutes after taking it, but then 10 minutes later was
throwing up and proceeded to throw up every hour almost on the hour for over 12 hours from
6:30 p.m to 1:00 p.m. the next day and that was so hard for me, as it did give my pain some
much needed relief only to have a terrible reaction...
I do recommend people to try the medicine they are prescribed as they might get relief from it..
you just never know...I know there is a medicine out there for me and I hope to find it soon.
Many well wishes to you Nini (Kat)
I agree I just left my PM Doctor partially due to feeling like a criminal for taking the meds I take,
I've been in Pain Management for over 10 yrs now and we should not have to be mandated to
take those drug tests every 6 months, especially when we've never had a bad tests...
Plus, everytime I see my RA doc his office wants to drug tests me and he doesn't even presribe me
my pain meds, that's just rude....They should be able to remember that...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 10/16/2011 9:56 PM (GMT -6)   
NiNi,
I have been on chronic pain medications on and off since 1992 and the only med that I can not take , at least not at the doses they gave it to me on , was methadone this last time. The funny thing was when I was on it in '92, I was on tens of times the dose that I was put on it last year and I did fine with it. This last time, I was only on 30 mg a day total and I just couldn't tolerate the sleepiness. It wasn't all of the time, about half way through until my next dose, but it got worse and worse the longer I was on it........so off it I went.
Other meds I haven't had any significant problems on, other than for a few minor side effects that went away, but now I am on a combination of LA and SA medications, muscle relaxers, antispasmodics, and Lyrica who all work really well for me , the majority of the time.
I do think that the media ( of all types- radio, television, print and the internet ) can have a negative impact on people's perceptions, especially when it comes to things like opiates. We see it here, all of the time- especially about subjects like how awful withdrawal is, or how life threatening it is to stop opiates, or how horrible it will be to stop a particular medication....and it's not always the case. In fact, in most cases it is none of those things.
I won't be made to feel bad because I am able to do far more than I can now, because of those meds than I am without them and I won't apologize to the pharmacist or the public because of taking them either.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 10/16/2011 10:01 PM (GMT -6)   
Glad you're not leaving us Kat cause we need you girl!!! I am glad your meds are working so well for you. Just keep on going as you're doing right now. You deserve to be able to live your life with dignity. Many of us wish so badly that our meds could help us.
Myself nothing ever helped me so i just have to learn to live with the pain. Here in Canada, there is just not enough help for those of us with chronic pain. It's awful!! Two weeks ago we had four days of very long detailed articles in our newspaper on chronic pain so they are trying to get the word out there.

Keep on posting. We all care about you.

Hope you continue having great days.

Suzane

sunrisedusk
Regular Member


Date Joined Oct 2011
Total Posts : 23
   Posted 10/17/2011 4:56 AM (GMT -6)   
Hi,
I sometimes waffle between not wanting to take anything on a regular basis to knowing for sure that pain medication is the best thing I could do for myself. And And there's also the nasty physical affects that being in pain can cause on our bodies. Plus I need and want to remain independent.

There is a wonderful book my doctor told me about , called, How To Make Our Medicines Safer. (I think I have that right). It's all about how many people end up with much higher levels of medicines in their body than another person who's taking the exact same medicine. Everything equal their blood plasma levels are way different, causing many problems for them.

.... I wonder why they even call it "side" effects when it's really just another effect of the medicine.....

Years ago when I was trying many different pain meds and having bad side effects I met with a doctor who specializes in medicines and how they effect people and how their effect when combined with other meds. (I can't think of his title). He told me that many people can only tolerate one pain medication and that's why they make so many different types.

I'm often afraid to take a new pill because of scary past experiences. Some of those could have been because the doses weren't correct for me, some aren't made to be taken together, and others are just because I'm me.

But I have no shame in taking pain medicine. I know I need it if I want a life. I would be happy to tell the world about how I need them, but we can't even tell our neighbors because of the stigma associated with them, or they might be interested in getting their hands on them.

It's true for me that because things aren't going well I get on the boards, and when things are going well, I'm busy living my life doing other things that I couldn't do before then. Also because of my health conditions my time is limited no matter how well my pain is managed, so I have to pick and choose what I want to do with it.

There are SO many things I want to do in life that when I'm functioning I'm out trying to do all of them. (And boards are not meant to be a substitute for face to face interaction when-ever possible IMHO)

I think is going to be a rough time coming up soon, and I don't have a physical support system around me. No friends or family except long distance telephone. This is largely because I recently moved to another state and ended up in an condo complex that I call the Ghost Town.

There's 200 units only 6 of them are occupied at one time because they're vacation homes. I can't even find a good coffee shop to hang out in. This was not what I had in mind when I moved here.

Anyway, I knew I needed to try and create a virtual support system so that I don't feel so alone if things go south. I'm also trying to learn how to reach out to others and not keep all my problems to myself.

(Phew. If anyone has read this far I'm grateful.)

Imme
PS: ( I've read that one class of pain medications is more energizing than others, they call it a side effect, personal experience says I like that one. :-)
Since 2001 I've been DX'd by many specialists: Fibromyalgia, Small Fiber Neuropathy, CRPS (right foot), Tarsal Tunnel Syndrome, DDD, Arthritis, Chronic Fatigue Syndrome, Myleopathic pain due to spinal cord compression, & Central Pain Syndrome. Compression Fracture L1 2003ish. MVA years ago, sustained a compound fracture Lumbar area.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/17/2011 2:21 PM (GMT -6)   
Hi all, thanks again for the input and support.  I would like to address one last issue.  My heart goes out to those of you who suffer cp in Florida.  I dont believe for a minute if the State of Florida had not profitted in  some way from those pill mills, it would never have reached the proportions it has.  When the media attention got to much for the public officials, down came the hammer.
 
Sadly with that hammer came many people who are suffering unnecessarly due to (a large amount of people who do not even live in Fl.) the how large and profittable pill mills had become.
 
Please for those of you who are suffering in Fl, write your legislators, make yourselves human faces to the people who are responsible for your pain.  If a face is connected to an issue, it makes us more human.  We are no longer just large numbers of people looking for meds.  You have to fight, I can only imagine how difficult this will be, but if you dont fight you are left at the whims of the the very people you have elected.
 
Again, thanks one and all
 
Kat
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 10/17/2011 5:06 PM (GMT -6)   
Hi Kat

I just have to put in my 2 cents as well. Just because you're doing well on your meds, doesn't mean you don't belong here. I would definitely miss you if you left.

My meds are not working so well today, but I'm so glad yours do.

Take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 10/17/2011 6:12 PM (GMT -6)   
I think I am going to say I am sorry, yes I am sorry, I think my first post on this issue was a little on the brisk side, I do realize that not one of us would be on them if not needed.  I think I got worried that to many people were just giving in to the negative attention.  I know thats not true, I also realize how very fortunate I am with my meds.
 
I forgot all those times I wished I was not dependent on meds for feeling well.
 
Let me be brutaly honest, in 96 my father passed in July after a long and painfull illness.  At that time I discontinued my meds, I was going to tough it out.  What a joke I played on myself.  It took many years for me to accept that this is my life.
 
If I being really honest, I agreed to a surgery (neurostim) on the smallest chance that I could be if not off them completly, then low doses.  This was just in May 2009, not that long ago.  I do not hate the fact that I have to take them everyday several times a day, well not anymore.  It is very difficult to realize that the life you once lived will be altered beyond recognition, let along know that the meds will be taken for life.  I am hoping for a long life, so what was the alternative, there was none.
 
I also think I (maybe on purpose) I dont remeber the side effects of the meds, I know there were, alot of them.
 
Ok enough gabbing, thank you each of you, I needed to remember just how difficult it is.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 10/17/2011 7:43 PM (GMT -6)   
NINI53
 
 Like you NiNI and others, there are times when I wish that I was not on these pain meds, and antispasmodics, in fact there are allot of times I feel that way. Like you and others,... sometimes I even feel guility about it. When I start feeling that way,  I  then start thinking about my nursing days, and how I would talk with my patients about the need and use of pain meds. Allot of  terminal cancer patients are terrified of taking pain meds and becoming addicted to them! I know that, that might sound silly, especially if they are terminal, but this is a real concern for allot of these people. Allot of these patients felt reassured, when I explained how these medications were just treating there pain, and it was no different than taking any other medication to treat any other condition!
 
You know this is just not rationalizing the need to take the meds! This is based on what I learned in nursing school, and as being a nurse on an oncology unit, where pain is always a issue! Pain is a real condition, it is not ssomething made up and not psychosomatic, it is real, we are not crazy or addicts, we have conditions that cause the pain. Pain can be debilitative, so why  should we be made to feel guilty for wanting to treat it?
 
I wish that there was not such a negative connotation with using pain meds! People in pain have nothing to be ashamed of because they are taking pain meds.  I can remember so many times when my ex use to say "" oh it can't hurt that bad!"  " your taking to many pain meds  that is what is making you sick!"  " How can you be in pain taking all that stuff?" and  yet if she even got a little splinter in her finger, you would have thought it was the end of the world the way she carried on about!  I use to hear the same thing from her family about me using a cain! You know NiNi that is what makes this forum so special, the people here understand what your going through, and know about the pain you feel! I can understand the things you post, just as I can what all the others here, and what they post about. I can empathize, just as everyone here can empathize with me. 
 
But just like what imme posted I can definitely relate to just about everything in that post!  This forum might not be the same as being around people in the flesh!   But it is better than nothing at all and not having anyone to relate to! That is why this place is what it is, and what makes this place so great,  because there is always somebody suffering with chronic pain that is in the same or similar circumstances as what we are!
 
I guess I really am rambling, but this subject is something that is near and dear to my heart, and it has so many other off shoots to it that so many can relate to.
 
Sorry for rambling on,
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Diane G.
New Member


Date Joined Oct 2011
Total Posts : 1
   Posted 10/18/2011 4:20 PM (GMT -6)   
Hi all... first time here.

For over 10 years, I have been on and off pain meds. I've always been afraid of becoming addicted to them. You read about so many people, not just actors, but regular folks who started on narcotics for real injuries and then wound up taking more and more until they couldn't live without them.

For a while I was on oxycontin, and having NEVER smoked or done any illegal drugs, I went through actual withdrawal symptoms when I stopped taking them. I didn't like the side effects and never had an issue when I stopped taking Vicodin (or other pain meds). But, holy cow! I was absolutely miserable.

Until, last year, I tried to bravely manage my pain with NSAIDS, massage therapy, yoga and a TENS unit, BUT I finally got back on muscle relaxants. Vicodin and Xanax. I'm still hesitant to take them and I break the cardinal rule of trying to stay ahead of the pain. But, I do tend to take them when all else fails.

The xanax, which eases the muscle spasms, doesn't give me any side effects. The Vicodin will cause nausea if I don't eat something first. But, the muscle relaxants...whooo those knock me out for a day and a half. All I can do is sleep it off.

White Beard is right though, that society still has a stigma attached to those who suffer from chronic pain and who have to take narcotics. I still worry when I call in for a refill, what do the nurses really think. 'Oh she's asking for another refill...hmmmm'

Purringlady
Have had chronic back pain since injury in January 2001. Arthritis developed in the injured area. Migraines since teenage years. Depression and anxiety. Pituitary cyst which has lead to developing Hypothyroidism and Diabetes insipidus.

Mysti
Regular Member


Date Joined Jul 2011
Total Posts : 101
   Posted 10/19/2011 12:37 AM (GMT -6)   
Hi Kathy,
Oh Kathy....I just had to reply to your post because I can totally relate to what you are feeling.  First of all, I wanted to tell you that I think you are an invaluable member to this forum and I, for one, have come to respect your input...you seem to be incredibly compassionate, as well as intelligent and you definitely DO belong to this group.
 
I understand what you are saying regarding the narcotic issues.  I've been on narcotic pain meds for about 5 years and I have felt guilty the entire time.  I know my guilt feelings are needless and it makes me so angry that I feel this way.  I have legitimate pain issues, but still, I feel like a criminal.  I hate how I feel when I stand in line at the pharmacy.  I hate how I feel when I call for a refill.  And maybe it's just me, but I feel like a criminal at the PM office.  It's even to the point that I hide the fact that I take pain meds....even to family members.  And that's a shame.
 
I love coming to this forum, because I have found such wonderful and caring people here.  But I have often felt that perhaps I shouldn't be here, either.  I feel that most of the members here suffer far worse pain than I do...and that makes me feel guilty as well.  I'm not sure where all this GUILT comes from.  I sought out this forum because I felt misunderstood and the need to find comeraderie (sp?) with others who could identify with what I am experiencing in life.  Honestly, I think the fact that we are all here NOW means we belong. 
 
I don't come here that often, but I always click on your posts and replies because you are someone that I feel I can trust.  Thank you for your responses to my posts and I hope to continue to see you here...
 
~~~HUGS~~~

DDD, 3 bulging lumbar discs, bone spurs, facet joint arthrosis/sclerosis, osteoarthritis, possible fibromyalgia (my dr's are telling me that I "most likely" have fibro but won't actually diagnose it...)

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 10/20/2011 4:32 AM (GMT -6)   
Nini,
I have been on all of them including methadone and have landed 11 yrs later with fentenyl..I do not get loopy with it..it works and you can nit abuse it because it is a patch. I have been on oxycontin too and got that energy burst too, must be a. Side effect for some... I found going on anti depressants actually lowered my pain level..sometimes this wires get crossed..pain-depression and depression-pain so I watch that also..I have oxycodone for break thru but do not take it, doesn't work anymore ..I just fear the day they try to take medications away from me ..I would not be able to function..have terrors about that..
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries,dx,fibromyalgia.42 degree scoliosis,pelvic tilt and neurological impingement, complete loss of neck curve and degenerative disc dx

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 10/20/2011 6:19 AM (GMT -6)   
Kathy,
I want to tell you that you belong here. The forum would not be the same without you. People come and go depending on life, their illness, and their need or growth. I would miss you if you left.

I am very sensitive to all drugs, not just pain medications. When my journey began, I felt horrible guilt for taking pain medications. Some doctors and well-meaning family or friends can make you feel as though all of this is in your head, you are taking too many pills, that narcotics for pain relief are wrong. I see a surgeon who swears that he can make me pain free. We are at the 3rd surgery, and still not pain free. I never will be. He has a goal to get me off narcotics, which would be wonderful, but surgeons for my conditions (endometriosis, adhesions in the pelvis and abdomen, ovarian remnant syndrome, and IBS) have reviewed my records and said I will never be out of pain. Accepting it is hard.

I envy those who don't have reactions to their meds, and can have a med change and not have to spend the next 2 weeks resting because of the adjustment. You and many others are blessed!

Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw
Pelvic adhesive disease, IBS, SI pain, arthritis, kidney stones, depression, 10 pelvic surgeries for pain, ovarian cysts, adhesions, endometriosis, adenomyosis, and possible ovarian remnant syndrome. Unexpectedly growing ovary #3 on right side.

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 10/21/2011 5:40 PM (GMT -6)   
Dear mindy/Monty mom,
I never realized we had so much in common with our pain, I myself have had nearly.wow, nine. Now pelvic reconstructions for a tear I had during childbirth..it is almost 11 years later and the pelvic pain is not gone..they were convinced that a hysterectomy was the answer to my pain and ...nothing ..I have accepted I will be on pain medications for the rest of ,y life but people have quit judging me in my family as much, they all understand now..or mindy, I just do not talk about it..I know I do not offer it as information to people , it is none of anybodys business ....
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries,dx,fibromyalgia.42 degree scoliosis,pelvic tilt and neurological impingement, complete loss of neck curve and degenerative disc dx

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 10/24/2011 2:53 AM (GMT -6)   
I can't believe that there is a place that I can say I AM IN SO MUCH PAIN I CAN'T STAND IT AND I COULDN'T MAKE IT A DAY WITHOUT PAIN MEDICATION and not look like a med seeker or a crimminal. I worked at a doctors office and the staff used to say just horrible things about patients who called in if they were even just asking for an appointment because their back hurt or if it had ANYTHING to do with pain it became this huge controversy it was horrible. I tried to be an advocate and say, "Some people really do suffer and have actual horrible painful conditions that make their life impossible without medication." I feel guilty when I go to the doctor because I am in pain. I have just been through a horrible situation where I had what was supposed to be aroutine gallbladder removal but it turned out to be a super major complex surgery and then there where horrific complications. I ended up being in the hospital for 22 days in June and it has triggered a bunch of stuff to go wrong and I am STILL not better. I lost my job I would go into everything but I had been on pain meds for awhile due to a back surgery but still having problems and I had gastric bypass 9 years ago and I don't handle NSAIDS at all after the stomach surg I just had I understand now why a little more too but they now think I have auto immune hepatitis and one of the things that has brought this to docs attn is my constant pain as well as a host of other things but to get the docs to listen to me was unbelievable. I am nearly bald now and I have been so upset and I finally asked my doc for an ANA test and SHE ROLLED HER EYES and agreed to do it anyway and it came back positive.....now I am finally getting help but I am almost 4 months into my nightmare. They have been treating me so badly like I should be over all of this and back to work. I couldn't help it I wasn't getting better, I kept getting different weird symptoms and they wouldn't listen to me mainly because it involved pain. Why should we have to feel guilty or ashamed about this??????? If I would have just stopped because I was so upset and let it all go I don;t know what would have happened to me.

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 10/24/2011 2:57 AM (GMT -6)   
Sorry I did ramble up there.....as for problems, I am not getting much relief right now. I take Percocets and I can take up to 5 a day but I am not getting relief. She has offered me Oxycontin but I have been afraid. Of what I don't really no. I already feel so guilty I guess. I worked for my PCP and the whole office made pain seem like the Clap or something. When I got sick my PCP who by the way was also my best friend stopped talking to me and we used to speak at least 3 hrs a day on the phone and all weekend long. It has been a nightmare. but my pain doc said oxy is time released but I am having an absorption problem and the gastric bypass I don't know if it would stay in my system long enough to get the full 12 hour benefit. Does anyone no???? I do need something that might actually take the pain away. I need to let go of the fear.

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 10/24/2011 4:32 AM (GMT -6)   
Unfortunately, it seems no medication is free from problems or side effects when it comes to pain management.

I used to use the pain patches that had NSAIDs in them and while it seemed to help a little, it irritated my skin and fell off pretty easily.

Celebrex and Mobic seemed to have less stomach irritation but didn't seem to work as well as pain compared to Naproxen. So here we have a medication that had less side effects but was less effective.

With Tylenol #3, the side effects were very mild, but my body built up tolerance too quickly.

Flexiril actually helped with muscle spasms, but it also made me totally lethargic for several hours.

As for my current medications, they seem to be fairly tolerable and provide reasonable pain relief, but both have their limitations as stated below:

Soma works quickly as a muscle relaxant and is quite effective. For me personally its the best choice for a muscle relaxant. However it does sometimes cause stomach irritation, and if I don't take a dose for 2 or 3 days, it can make me a little dizzy for about an hour.

Tapentadol (nucynta) generally works well for my pain. At 75mgs it generally has only "mild" cognitive effects and is VERY tolerable for daily use with minimal side effects. However at my breakthrough pain dosing of 150mgs, its cognitive effects are significant and can make me feel very naseated, dehydrated, and cause closed eye visuals/mild auditory hallucinations. Since being put on Soma, I've rarely needed a breakthrough dose so this medication isn't too problemsome.

From my experience every medication is different and most of the ones that actually WORK seem to have some mental or physical side effects. There's ofcourse the feeling of being judged when you pick them up from the pharmacy. However, for me the side effects and judgement are well worth the pain relief achieved.
MRI revealed disc bulge and test injections revealed RA. Radio Freq procedures helped for months, but pain is up and im having the procedure done again. Currently on 75 mgs of Nucynta (tapentadol - A MOR + NRI) 2 to 3 time per day and Soma 350 as needed.

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 10/24/2011 5:53 AM (GMT -6)   
The energy alot of us get from narcotics is called oppositional effect-makes sense....just like stimulants to calm donw kids.

The only way to change the atmosphere that the DEA and EDA have caused. The FDA tells manufacturers how much adderall to make and they screwed it up, didn't make enough and 1000s of kids went w/o meds.This America, for God's sake. Those stupid buggers work for us. Write, write and write you Rep and Senator...I know it is not much and "oh what can one letter do" orone vote. Well all those "one letters" all add up

My last pain doc threw me out b/c I complained to Board of Directors at the hospitascrew em" I found another doc.

Anyway, we are being treated like 2nd class citizens but only if we let them

I'm stepping off my soapbox now lol
Maggie
"We never realize how strong we are, until being strong is the only thing left"
Major Depressive Disorder
PTSD
Chronic Pain
Fibromyalgia
Bursitis, sciatica, arthritis
L 3/4 anf 4/5 are not there any more-advanced degenerative disc disease
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